Just wanted to introduce myself and tell my story. It’s quite long (even though I’ve tried to make it shorter) so if you get through it, thank you from the bottom of my heart.
Hi, I’m Belle and I’m 37 years old.
In 2015 I was diagnosed with a condition called Chiari Malformation. At the time I was working 40+ hours a week and taking 20+ hours a week to commute to work. I was also playing roller derby, going out socialising every weekend, and on the odd days going to the gym.
After having my initial surgery (had some skull and spine removed) I had an awful recovery. I’d ended up moving back in with my mum so she could take care of me.
After a couple of years, although I was no where near back to my old self, I somehow learnt to manage. I did get myself a ‘emotional support dog’ (unofficially) and named him Chester. He helped me so much with dealing with everything.
Then in 2019 came the devistating news that mum had stage three breast cancer. The tables turned. I then became her full time carer. She had six chemotherapy sessions and fifteen radiotherapy, alongside more IV treatments to help her bones as the type of chemo would affect them. She then had a double mastectomy.
That first year was tough as I’d watched her go from my strong, independent, full of life mum, to a sick, depressed and weak mum. At the start of 2020 when COVID hit, she hadn’t been out the house for twelve months for fear of catching something as her immune system was in bits.
At the start of 2021 she was feeling a bit off one evening so I asked her to sit and checked her blood pressure and heart rate and it was in her boots, so I called an ambulance. When they had her set up on the ECG machine she started to have a full blown heart attack and was rushed to hospital to have a stent fitted.
In the mean time I had found out that I had a spinal fluid leak and was dealing with chronic head pain. So it was difficult to try and look after her while looking after myself. We then get to summer 2022 and I had surgery to try and fix the fluid leak. Sadly, it didn’t work. But a few days after I was discharged mum caught COVID and was put in intensive care. I always remember the phone call from the hospital telling me and my siblings to go in as they didn’t think she’d last the night. I’d never felt so scared and the reality really set in that my mum was in fact not immortal like I seemed to think she was.
After this she was in and out of hospital regularly with pneumonia and problems with her lungs. A few months later we got the same phone call to come into the hospital as she wasn’t doing well, but again she fought through it. In April 2023 my dog Chester had a freak accident in my garden and broke his neck. We had to have him put to sleep. Myself and my mum were absolutely devastated as he was a bit nanny’s boy.
In this time she was starting to become quite frail and a bit wobbly on her feet. She had a few falls at home, but nothing ever major. Until September last year. She’d fallen and broken three ribs and her hip. They had to do a partial hip replacement under local as her heart wasn’t strong enough for general anaesthetic. I went to see her as she came back to the ward and although she was a little uncomfortable, she was in good spirits.
Then the next morning we got that dreaded phone call again. She had gone into septic shock and her organs were shutting down. Her kidneys had completely stopped working and her liver has filled up with blood. They put her on something called Amber Care (basically as she wasn’t responding how they’d want and she could get worse or better but they weren’t sure).
Three weeks later she was discharged. But a few weeks later she was back in hospital with difficulty breathing. By this point I wasn’t sure if she’d be home for Christmas, but somehow she again managed to rally round and she was home for the Christmas festivities. Looking back this will now be a fond memory of mine.
Now we get to 2024. The start of February she was again struggling to breathe so went back to hospital. By this point she was around six stone and pretty much unable to get herself about. She kept suffering with delirium with these chest infections.
It was definitely a case of “oh she’ll rally round again and be home in no time”. Until I again got that phone call. But this time it felt different. When we got to the hospital the doctor took me into a side room and showed me her latest chest CT. She was working on about half a lung and that was full of pneumonia. She was unconscious but the nurse told me she could hear, so I played her some of her favourite music and told her how much I loved her. At 5:30pm on the 12th of February she took her last breath with me by her side. It was the most agonising thing I’ve ever been through. She was my rock, my best friend, my confidant.
I’m due to have my fourth brain surgery in a couple of months and I don’t think I can do with without her.
I know it’s still really early days but I’m so heartbroken. I’ve basically watched her slowly lose herself over the past five years and I wish I could have done more to help her. She didn’t deserve any of that. My heart breaks every day with how much I miss her.